Episode 157: The Critical Role of Disease Foundations in Biotech Innovation

Disease foundations do far more than raise awareness. They can help shape what gets researched, funded, and ultimately brought to patients. And sometimes it can start with just one person. You're listening to BIO from the Bayou, empowering biotech leaders with the tools, assets, and expertise to improve healthcare outcomes.

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Serving the entire Gulf South, but recorded in the heart of New Orleans. Welcome back to BIO from the Bayou. I'm your host, Dr. Elaine I'm Elaine Hamm, the executive in residence at Tulane School of Medicine, and today's guest is Dr. Tim Kutsey. He's the president and CEO of the National Multiple Sclerosis Society, which is a foundation dedicated to building a world free of MS. Welcome to the show, Tim.

Thank you, Elaine. Great to be with you.

Yeah, you as well. Well, I wish I could have let our listeners in on our secret conversation where we talked about your former microbiology days, but that's probably a, a whole podcast in and of itself. As a former microbiologist, I could go on forever about that, but I would like to now focus on MS, which is actually where I ended up as well with my own company. But one of the things that I really loved is understanding the role of foundations and helping us move progress forward in different disease indications. And I thought your society in particular was very, very helpful and very forward-thinking in this manner. So for our listeners who may really only think of disease foundation in terms of patient advocacy and that type of thing, how would you describe the role of what you guys have done in the entire research innovation ecosystem that really surrounds MS. Sure.

Yeah, so again, great to be with your audience. For those who don't know what MS is, so MS stands for multiple sclerosis. It's a neurological disorder that affects about 1 million people in the United States and is diagnosed oftentimes between the ages of 18 to 35, but now kids as well as older individuals are diagnosed. And good news is there's treatments and therapies. We could have a whole show about the explosion of therapies in MS for another day. So, our organization, the National MS Society, has been involved in trying to find solutions for multiple sclerosis for 80 years.

Yeah.

We were founded by Sylvia Lari, whose brother was diagnosed with MS in 19— mid-1930s, I think 1937. At that time, there was nothing, and he was basically told to get his affairs in order and just, you know, prepare to die from MS.

Yeah.

Sylvia didn't take that. And so she actually put an ad in the New York Times, an 11-word ad that asked the question, will MS— will anyone recovered from it please communicate with patient? 50 or so people wrote back to her. This was in 1945. And then they gathered and convened, and just a year and a half later, we funded our first grants, one to Columbia University, one to University College London, and we've been funding research ever since then. Organizations like ours really play an important role in connecting the people who are affected by the disease with the scientists, with the policymakers, with the clinicians. And in our more recent era of the eras of the '80s and beyond, to also the biotech innovators and the pharmaceutical companies and the part of the ecosystem that plays such a vital role in taking the discoveries that we help enable in the university lab to people through the route that is the biotech sector and the pharmaceutical sector. So we are very proud of that. You know, we, you know, I'm a scientist by training, and I, as I know you are, and right, science doesn't move in a straight line. And what, you know, organizations like ours, I like to think of us as connecting dots, connecting people, because ultimately I believe to my core, people discover cures.

Yeah.

It's not funding mechanisms that discover cures. It's the scientists and the people that discover a cure. And so that's how we see our work.

Well, I don't think I've ever heard that story of how the society really began. And that's pretty inspirational, aspirational of one person just putting out a call in a newspaper and then funding a grant or 2 a year later is pretty impressive. And then now, now, now look at you. So.

Yeah.

And I'll, I'll share an anecdote about that first grant. So that first grant went to fund a scientist by the name of Alvin Cabot. The immunologists in your audience will recognize Kavett's name as the person who really was one of the pillars of what contemporary immunology is today. And he was studying, you know, immunoglobulins in the spinal fluid of people and discovered that people with MS have in their spinal fluid immunoglobulins present, which suggests something was going on with the immune system. But that marker of the presence of what we call oligoclonal bands, in spinal fluid, which he discovered in the late 1940s, is used to this day in confirming diagnoses of MS. So when— if a doctor needs to, sometimes they'll order a spinal tap to see, you know, we've got these signs and symptoms of MMS. Let's see if you have OCBs, as we call them, in the spinal fluid. And yeah, so we trace that all the way back to Dr. Kabat's work, which is, again, part of— you know, at the time, think about the moment. Polio was something that people were focused on.

Right.

There was a real aspiration World War II had come to an end. So lots of possibility. And so that spirit of possibility that enabled them to do that work is how we see our work today. We continue that spirit forward of our founder.

Well, and so as, I mean, you guys have changed quite a bit though since those days as well. Where do you see you have changed and where do you think you are changing? You mentioned biotech funding, so that's one piece of it, but it's a, complicated ecosystem that swirls around a disease indication.

It is. So certainly early on days, like many organizations, it's about funding the basic science, understanding the fundamentals. What do we know? What don't we know? Who gets the disease? But then as you do that over time, you start developing an interesting intersection of science, healthcare, industry, the lived experience of people living with MS. And so our original remit was to fund just discovery science, but then we've added clinical science to that. We've added training the next generation of fellows. So we've had a fellowship program to train people and launch the careers of people in MS since 1956. And we have funded more than 1,000 researchers who have made incredible discoveries. At least 4 treatments that are used for MS today have their origin story with fellow MS Society fellows actually doing the seminal work that led to the discovery. I could rattle them off. And so, you know, those leaders seeding the system is one of the things we do, but then adding things like, you know, we need more neurologists, more MS specialists, enabling the development of those people. Going further and facilitating global collaborations and networking, again, a new way of working science. Through the years, we've also added the balance of there's bottom-up, blue-sky research, as I call it.

Yeah.

And then the top-down approach, which is like, we need to solve specific problems for specific things. And so, we've added that philosophy to our portfolio to say, we need the discoveries that will lead to the drugs, say, 10 years from now.

Yeah.

But if we see a gap in a certain area, we also want to fill in with that gap. And so, areas like genetics, what are the genetic underpinnings of MS, the differences in gender and how gender imbalances might contribute to MS, promoting myelin repair, I know an area that you're very passionate about. And your biotech career. And then more recently, things like aging and the disease and things that we know. And so, you know, part of what I see our role as disease organizations, not just the National MS Society, but many of our peers, is really setting connectors, you know, trying to connect dots, facilitating, addressing issues.

Yeah.

But I also, I will say, and this is something that I'm very passionate about, is Taking a very concrete point of view to say, this is where we need to go, and not sort of taking the, you know, we need to just keep knowing and knowing and knowing and knowing. At some point, you need to go from knowing to doing.

Doing.

And knowledge generation is fantastic, but people need solutions. And so this is where, you know, we published a few years ago our, what we call our Pathways to Cures roadmap that basically laid out a marker that said, You know, we're about stopping disease progression, restoring lost function, and preventing the disease altogether. And that's our scientific blueprint. When I became CEO of the MS Society, I took that one step further and said, you know, we have that as our scientific blueprint for the science we want to drive. What would be the world we want to create as a result of that? And so the world I'm interested in seeing us create is one where we have 4 pillars to it. The first pillar being, I'd love to see a world where somebody could be diagnosed with MS in hours, not weeks, months, or years, as happens today. The second pillar being, I want to see a world where people can have access to the treatment they need for where they are in their stage of the disease and be able to afford it.

Yeah.

Really key. The third pillar being, MS is not something that someone should try to face alone, but that they have a community around them. to support them. And then the last pillar being like, can we aspire to a world where there's nothing to fear when you hear the words you have MS because we found a way to cure it? And so to me, those are the world we want to create. The Pathways to Cured roadmap is our vision for scientifically how we drive that.

Just some small aspirations.

Yeah. You know, I, look, I'm a firm believer you got to set high goals and you reach for those high goals as opposed to Setting the easy goal that is not as much effort.

Well, and one thing that I really appreciate about what you guys do, and something you mentioned, was the facilitation piece, because that's no easy feat. I mean, I think a lot of times, so a lot of our listeners are scientists or they're biotech entrepreneurs or biotech executives. So they think of it kind of from these 2 buckets of funding, of course, we always think of it that, and then also patient piece, which obviously makes sense as well. But there's so much more than that. And it's, it's as simple as advocacy and awareness. You guys put forth an incredible document just last year, The Voice of the Patient, which I thought has been incredibly helpful for us because a lot of times when we're pitching to even physicians, if they're not neurologists and they don't see MS patients, they say, well, there's drugs out there. It's not a big deal anymore.

Mm-hmm.

I cannot tell you how many MDs have told me that MS is not a problem. And being able to show that document and saying, no, no, no, I mean, here's obviously the biggest challenges, this is still an issue, here's where the gaps are, has been really helpful. So I think there's that facilitation piece that's important. But also something you guys have done recently is connecting the government funding piece as well. Mm-hmm. Yeah. And pulling in congressionally directed medical research and bringing the government into the piece of it too, because they're a big piece of moving things forward as well. Tell me a little bit about that and the thought process.

Sure. So certainly, the Congressionally Directed Medical Research Program has been one of the things that we're very proud of. You know, it is— for the audience that may not be so familiar with it, first of all, the Department of Defense does fund research. They do fund medical research.

They do.

They fund a wide variety of research, but the Congressionally Directed Medical Research Program, or CDMRP as it's called, is a specific funding vehicle that Congress authorizes each year. And it hits a number of diseases in different areas. And so, we've had an MS program for a number of years ago. Originally had its origins in the fact that we were noticing that veterans who had fought in Gulf War number 1 back in the 1990s, I'm sure some of your audience will remember that, and some of them may not remember that Gulf War. But after that Gulf War, there seemed to be a higher preponderance of veterans affected by MS. But, you know, more veterans also are, you know, are medically discharged because of MS and because it's being diagnosed more frequently. So there is a keen interest in that area. And so what the DOD program does is it funds research that is a bit more risk-taking perhaps than the conventional sort of typical models. And so we're very supportive of that. Because it's congressionally directed, it does require annual effort on the part of the MS Society and our activists to help keep people focused on that and keep Congress focused on that. We had a little bit of a blip You know, we'd been funding it, they'd been allocating about $20 million a year. There was a blip in the first, in 2025, where it was zeroed out by Congress as part of one of their bills. But thankfully this year we were able to, with our congressional champions, bring it back. And it's just an important part of the ecosystem. And I do think I want to stress, it's not like we're saying that what NIH and other organizations are doing is not what we should be pursuing. Absolutely need to pursue and support proactively the work that the National Institutes of Health does. This is a vehicle that goes beyond that, provides flexibility and latitude, and then it's also part of the overall funding ecosystem that organizations like ours play, but also that the biotech sector, life sciences investors play in multiple sclerosis. And we need this because, to your point, Elaine, one of my biggest frustrations is people think that MS is solved. And it is true. That there are dozens of treatments for multiple sclerosis. Now, they're in discrete classes, so it's not like we've got 30 individual things. There's classes of drugs. I've described many of those classes as they're one-use treatments. So if somebody starts on— you could say the doctor's toolbox is so filled with drugs, but I would say, no, no, it's not true. It's like they have 5 screwdrivers, 5 hammers, 5 wrenches.

Yes.

They've got these different drugs, but You know, one group is they're all a screwdriver, another one they're all hammers. And so, and the challenge for the clinician is that they'll diagnose the person with MS and they'll, they'll take out the screwdriver, they'll treat them with that. But unfortunately, they only get one shot, so they can only use the screwdriver once and then that class is out.

Yeah.

And then if that stops working, they'll go to the wrench and they'll try something else. That then is a one-shot wrench. And then they'll have these hammers, the big hammers as we call them. There's some small and big hammers. And here's why it matters is, you know, there's this perception that, well, with so many treatments, MS is locked. Yeah, it's true. The treatment of MS for people diagnosed today is fundamentally different than it was 10, 15 years ago.

Absolutely.

One of the benchmarks we use is the number of relapses people may have. When I started working at the MS Society 25 years ago, not unheard of that people would have 2 or 3 relapses a year. Now, because of the treatments we have, some people I know in our community will say, I haven't had a relapse in 10 years.

Yeah.

And so they're well managed. But the problem is, and this is why we need what you and others are doing is so important, and why we need the life sciences sector to not look at MS as being solved, is MS is a lifelong disease. So I have to break it to you, it's not a short-term disease. Someone diagnosed with MS, age 25, if they live to the age of 85, they could live with MS 65 years.

Surprising.

This is a lifelong disease. Until we get to the point where we have a cure and we can stop it in its tracks, we need to think about it lifelong. So that means we need more therapies for those longer-lived therapies, right? We need the biotech innovators to come up with the thing that stops it in its tracks, that's easy to take for a lifetime without Adverse events. We don't have that right now.

Yeah.

And so this is why we cannot lose sight of investing in the fundamental discovery, right? Because the discoveries of today are the drugs 10 years from now. We need the discoveries of today to be able to do the biomarker and the precision medicine panels, all that kind of stuff. But we also need the innovators to be thinking about, well, what are those targets that will allow us to do so? I'm very passionate about this, you know, because the reality is we cannot take MS for granted. Not one iota. People will tell you, those people will tell you that haven't had a relapse for 10 years and are well managed today. They'll tell me, they say, look, I feel great. Haven't had a relapse, haven't had a new lesion. But you know what I can't do? I used to be able to run marathons. I have to work my way through a 5K.

Yeah.

So it's just, I am being real with your audience. This is why it's so important that we cannot take progress for granted.

And consider mission accomplished. Let's move on to the next disease. It's not the case. There's underlying inflammation. And like you said, disease changes over time. And luckily we're all living a little bit longer, but that means the drug I'm going to take at 25 is not going to be the drug I'm going to take at 65, and nor should it be.

And no, exactly.

And frankly, there's, you know, oncology's been a little bit different than CNS diseases because AI has done wonders at determining biomarkers and matching patient stratification and strategies for treatment. CNS is a little bit behind on that, and I feel like the promise of AI just really hasn't unlocked for the neuro space. I don't know how you feel about it, but I've been very frustrated when I see what people are able to do in other disease indications, and you're just like, oh, just take patient data. Well, it's not that simple. We can't just add ChatGPT to the mix and call it a day.

This is true, but it's interesting. I was thinking about this in advance of our conversation, and it's so interesting you trigger that. You know, we were talking about at least my graduate career and in the many, many moons ago category now. But here's the thing. So, I agree with you. I think AI, I think we haven't quite fully appreciated what is the accelerating power it can have in science.

Yep.

And so, here's the frame of reference I'm thinking about it. So, when I was a grad student, my first journal club that I went to, Many moons ago. I won't tell you exactly how many moons ago, but it was a few. Well, so we were reviewing this science paper where Lee Hood's lab had published the technology underlying what would be called rapid sequencing of DNA. And so they had come up with what today we completely take for granted around automated sequencing. Absolutely. And like, we were like, back in those days, like, you know, I was doing genetics research and you would bang away at the old-style manual kind of thing. And like, it could take you like 6 months to, you know, decode one gene where like now you can do it in like, you know, a day. Yeah, on your lunch break. Exactly. And I don't think at that time we fully appreciated what that era and what bioinformatics could drive for us. Like, fast forward now, like we have this incredible International MS Genetics Consortium that's identified all these various, you know, markers that are risk factors for this. But now for susceptibility, but now we've also got our unlock of our first one for severity of the disease and the potential that you could start doing more screening of that. All of that was unlocked because of Lee's, you know, many things back. So I actually think the technology innovation that we have now in terms of knowledge and the ability to be predictive about chemistry and all those things, I actually am incredibly optimistic about what it could— yield for us as long as we don't let the fear of it get in our way.

Yeah, that's the other side of that coin these days, bringing up AI. There's a lot of concern.

Fair enough. Yeah, I would definitely say I'm on the continuum of like, no, I actually think more possibility, properly managed. And like, and there are a lot of things we don't know, but when I think back of what rapid DNA sequencing has done—

Used to be, yeah.

And what it used to be, and like so much of how that technology has changed Not just science, but think about, like, the— what it's done for criminal investigation and all so many aspects of things. You know, it's—

Relatives you didn't know previously existed.

Yeah. You're reuniting, you know, remains of, you know, World War II, you know, people lost in World War II and all of that. It just tells you how technology in and of itself is neither good nor bad. It's how it's used.

How it's utilized, yeah.

And I think that that's sort of how I see it. I see incredible possibility. And again, this is where I see organizations like ours needing to continue to pivot. Like, the nature of the science we fund could actually change. So it could go beyond sort of like funding wet bench science and stuff like that, but actually funding innovators who are redesigning molecules in a computer to be able to then test them and validate them in a clinical trial, which is how oncology and other diseases are being revolutionized. I mean, you—

Yeah, absolutely.

Right? I mean, that's the beauty of chemistry, at least, right? The laws of medicinal chemistry are pretty fixed, which is good because then you can actually translate that to a computer pretty readily. And I think the questions scientists can ask responsibly are almost unlimited. Of course, we have to think about that within the context of responsibility. But here's the thing I would say to your audience is that That's always been true. Questions— scientists have been able to ask lots of questions.

Yeah, we're used to that piece of it, of regulation, of being responsible. We had to take all those ethics classes. I mean, sometimes some of us need to be reminded of them, but at the same time, I mean, you're right. Technology is neither good nor bad. It's just how it's utilized. And, and we just have to make sure as scientists that we're not going on fishing expeditions and that we're asking, going back to the scientific method and having a hypothesis and going out and proving it wrong or right, which is Sometimes hard to remember when you have the promise and a whole lot of data, like what could be done.

But let me actually, I'm going to share with you, let me challenge your thesis a little bit. And then it's true, I think as scientists, we try to be very hypothesis-driven and not necessarily go on fishing expeditions. However, I also do think that what AI is allowing us to do and the availability of data and the ability to perhaps think about patient data in new ways allows us actually to do more exploration without necessarily being— saying what we know we're looking to find, but really much more of that open survey the sky to see how many stars we have, and then we can hone in on a particular set of stars. It was very hard to do that within our previous systems.

Right.

And so I do think I'm starting to lean more towards— we also, we need to still be hypothesis-driven and ask good questions.

But you want to get on a fishing boat, it sounds like, and go out there.

I don't necessarily want to go fishing. I actually am— I could say more exploration, because I think the question I have is, what haven't we discovered because we haven't been exploring? What horizons are out there that AI and technologies let us ask in ways Like, we don't— I think I would argue that we don't fully understand the systems biology within most patients. But in order to map those systems, we've got to understand what are those systems. And so I do think that there's— we might be entering an era of exploration, which could be super interesting. And this is where I think scientists, we as those of us who have grown up a certain way, because I've been in enough grant review meetings to say this is a fishing expedition.

You know, you know. You've said those words.

I've heard that. I know those words. They're the death knell for any grant. This is a fishing expedition. However, I think the question I would say is if we don't know what's out there, how do we find it? You know?

How do we find it?

You know, just like some would say that it was a fishing expedition to study the bacteria that lived at the— at the base of Old Faithful in Yellowstone.

You're bringing it back around to that, to Old Faithful.

Well— Old Faithful is easier than we have.

I agree, but I would say that there's so many companies out there in oncology that are doing the exploration. I don't know if Neuro has that piece of it. They don't have the— I don't want to say middleman, but we have the biologists, we have the data, but there's— it's hard that there's a big gap where I feel like other industries that have successfully utilized AI and drug development, they've been able to bridge that gap with service companies and companies highly focused on bridging that. Agree.

Agree. And this is where I see— I hope we get there. And this is where I see organizations like ours and—

Yeah, absolutely.

Organizations playing a really critical role to bring it back to the topic of—

To bring it back to why we're here. As Ian's like, God, this has gone on 25 minutes, girl, wrap it up. Bring it on home for me, Jim. You're good. You're good.

Bring it home. Well, here's what I would offer is that organizations like ours have the person with the disease at our heart. And I think we also, and this is something that I stress, is we have to be bold enough and brave enough to say, what don't we know? How do we enable people to know what is not known? How do we leverage our resources to take risks? I have literally been in a grant review meeting where someone said, we should not fund that grant because, without getting into a lot of detail, saying, why are we even studying that obscure aspect of biology? And now I can point to therapeutics that are in clinical trials because the innovation that came out of that fundamental study led to subsequent abilities to do high-throughput screening that we could not have imagined. And so it's one of the things that I carry with me is that our job is to imagine what might be possible and then to leverage our convening power, our funding power, and our ability to tell stories to be able to enable those innovations. Because if we don't discover those innovations, we don't get the better life we want for our patients. And that's what we should be going for.

I think that's such a great description of one of the really important roles that foundations can play in moving progress forward for disease. I think that's what we talked about in the very beginning of just, you're a facilitator and a convener of data and patients and innovators. And that's such an important piece of the ecosystem that I don't think a lot of people realize, and that I don't think a lot of disease indications have. And I think that that's a real credit for the MS Society being able to fill that need in such a huge problem. I think we'll be interviewing another foundation in the future as well, a foundation for fighting blindness and understanding how— and they're a little bit different in how they address the ecosystem. But it's such an—

Terrific.

That's why I wanted to have you on, because I think it's such an important piece to moving a cure closer to patients, is foundations. And, and then also, you know, as, as scientists in academia or biotech look for funding opportunities, like you said, the NIH plays a role, but They're only one role, and there's lots of other sources of capital to help fund innovation, such as the MS Society, such as CDMRP. There's a lot of different ways that we can connect this, the dots, and bridge the gap.

Absolutely.

Well, Tim, thank you so much for coming on and sharing your vision and getting a little nerdy with me. I appreciate that. I'd love to have you back on and talk about AI and CNS. I think that's a whole other podcast in and of itself because I have thoughts.

So yeah, I could tell you have thoughts. Well, no, it's a pleasure to be with you and your audience. And again, just thank you for giving us an opportunity. I've appreciated the conversation.

Great. Well, as always, we'll make sure to have Tim's contact informational links posted in our show notes. Make sure you check them out to learn more. And thank you once again for joining us at Bio from the Bayou.

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